There must be some type of path people follow with their emotions. Last week was not a good week for me...at all. Last week I wanted to find information about ILC. I was warned by Dr. Gottlieb before to stay on certain websites to gain information about breast cancer, well I've never been a good listener. I went into forums, other hospital websites, clinical trail result web pages, alternative medicine websites, you name it, I was there reading, researching. What was I looking for? Someone like me who had the same diagnosis. I wanted to see what they did for treatment and more importantly how long out from their original diagnosis they were. What did I succeed in doing? Scaring the crap out of myself and probably you as well! So my apologies to you. I don't want to scare you away from my blog but I want you to be my companion as I move thru this. I need your vibes to help me....your vibes must have worked because I have calmed down and I am again in control of myself.
As I did read thru the forums I did find some people like me but really no one except 1 person. Interesting enough, she has chosen the path of no treatments what so ever other then alternative medicine i.e nutrition, meditation, exercise, etc. I found it interesting reading her blog but I did gain insight into an oncologist she consulted with here in the bay area that I might be in touch with that concurred with her decision. Absolutely incredible and brave. I am not that brave or some people might say about her decision, stupid.
As I read thru the forums what became clear to me was I was lucky, very lucky. I had breast cancer in my body twice now and at this writing, prior to any further tests, it is not in any internal organs, bones, blood, etc. This is my positive in a negative. Some of these women had the same type of cancer as me but aggressive grade, or 6 positive nodes out of 10, or non hormone receptive....what ever the case was, I realized after reading about these other women was, if I am going to have breast cancer I was better off then the next gal. I think you have to look at your diagnosis like that. I am better off then the other person. There will be someone who will be diagnosed with DCIS stage 0, 0 node involvement, hormone receptive who will look at my info that I registered for the forums and think the same, thank goodness I'm better off then she is. Please don't think of me as being selfish but I think it's simply a fact. Any form of cancer is awful and you wouldn't wish it on anyone because of the baggage that comes with it. You have to find a positive in a negative to keep going and keep your spirits up.
Sometimes it is difficult keeping positive especially when you have been handed a sheet of paper that shows your mortality percentage. Ya I know, I'm looking at with the "glass half empty" perspective instead of the "half full" perspective of an 83% over 10 years of a non reoccurence. Well, I want a big ass glass that is over flowing with 99.9%. Again it's a matter of taking my health care into my hands to find my big ass glass that is over flowing. I think I am going to find it but it is going to take time since everyone else is making appointments with the same Dr.'s looking for the same big ass glass as me.
I finally am getting my drains out today. I had to move my appt from 8:00am to 4:15. The ladies in the office are sick and couldn't be around patients so now I have to wait until the Dr. is in later in the day. I have been doing nothing to make sure the drain levels remain low. I made the mistake of doing alot of walking yesterday and it showed last night when Frank wrote my levels down.
I am working on a check list for people who are going to have a mastectomy. I figure I can help others by doing this list since I have made it thru and found out what was helpful thu this process. I will be posting it on my blog or email me if you want a copy.
I have to say, it has not been as bad as I thought it was going to be. My expanders are in place and I think I'm ahead of the process since I already have slight cleavage, very small, but at least something. I had implants before which created the space behind my muscle. The Dr. placed the expander in and has already filled it slightly. There is pressure and some pain in my arm pits. I get a sensation across my chest sometimes similar to the feeling when you sit on your leg wrong and it goes numb. My hands and arms will go numb as well but only for a few seconds. I haven't raised my hands over my head yet but I can use my hands easily to brush my hair, use the blow dryer, etc. I once again looked at myself in the mirror last night. It is not an attractive sight but I know once I get thru this I will be done and relatively whole again. A sexy lacy bra can hide anything and once your in the middle of having fun, it really is not the only thing that counts ;-)
Keep me company as I travel thru my journey facing breast cancer again.
Why would anyone want to read about someone else's problem when you have plenty of your own? Maybe one day a loved one, a friend, or you will be diagnosed with breast cancer. My blog might offer insite into cancer resources, thoughts, questions to ask, or guidance in helping you deal with this disease. These are my experiences and suggestions. Every breast cancer is different. If you are touched by breast cancer, be sure to consult your Dr. for direction in treatment.
I equate my blog to the emergency evacuation instruction the flight attendants do before you take off on an airplane. Nobody pays attention to them but when your plane is about to crash you think, "sh*t, why didn't I pay more attention to them? Which color cord do I pull first again?" We have so many things going on in our lives that one more thing to dwell on that doesn't apply to us right now may not be important but when it does, we wish we would have paid attention.
My blog is something you might read a couple times or maybe follow. Hopefully you gain some knowledge about breast cancer, in particular, Invasive Lobular Carcinoma (ILC). It is the 2nd most common type of invasive breast cancer however it only accounts for approx. 10% of all invasive breast cancers. It is the silent breast cancer. It is generally not detected with a mammo but rather an ultrasound. Invasive Lobular Carcinoma (ILC) is what I have been diagnosed with. My suggestion to every woman who is of mammo age insist on an ultrasound with your mammos.
UPDATE 3/2011
I have had my bilaterial mastectomy and I am recovering. ILC is a sneaky cancer as I said above. My various Dr.'s here and at UCSF confirmed the size of my tumor should be between 2.5cm-3.5cm with possibilty but not most likely, 7cm. After my surgery, my tumor was confirmed to be 11cm. My Dr.'s are very knowledgeable and are on top of things. This is simply the truth about ILC. I had mammos every 6 months, ultra sounds, and MRI's. With all of these, it was not picked up until 1/2011. The good news, if you can call it that, only 1 sentinel node out of 2 has micromastic findings and 5 aux. nodes were negative.
Be sure to start my adventure from the blog history on the right. I have tried to bold points to make it easier to extract the important information. If there is anything you get out of this blog, refer to my Dr.'s listed below if you know someone who has been diagnosed with breast cancer in the East Bay. These Dr.'s; Dr. Gottlieb, Dr. Wotowic, and Dr. Sherman are my 3 musketeers....all for 1 and 1 for all!
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